LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS.. IT'S ABOUT LEARNING HOW TO DANCE IN THE RAIN.

Sunday, September 6, 2009

Wahoo...

My little munchkin is all the way up to 20 mls per hour of Nutren Jr. through his new Gtube!I confirmed with surgery today that he does indeed have internal staples in his stomach, so advancement will continue to be s l o w...If you recall, he wasn't allowed to begin feeds until he was three days post-op which means that including NPO time before surgery, he hadn't had anything in his belly for 4 1/2 days.

They don't want his stomach stretching any until they're sure the muscle has healed. He has a terrible history of his incisions opening up (dehiscing), after surgery. So slow it is. As they slowly increase his feedings, his IV is slowly being reduced. Hopefully within the next two days he will be at full feeds, or what "full" will be for a while. Once we reach that goal and he can tolerate it well, we can go home!

He had a pretty good day today. As long as his pain meds were kept on schedule he stayed comfy and happy. He isn't able to sit up to play but we still had a few giggles and his awesome smiles. For now he is content to have me next to him so we can play a hearty round of peek-a-boo.

I'm a 37 year old Mom to four boys and two girls. My youngest son was born with Down Syndrome and the many medical issues that come along with it. My lil man has congenital heart disease, lung disease, GI problems. He's survived heart failure, open heart surgery, a diaphragmatic hernia that collapsed his lungs, and he is currently battling failure to thrive brought on by the toll it's all taken on his little body, but he's strong and together we are learning to navigate the craziness and to revel in the beauty that is this life.
This is Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a myeloproliferative blood disorder thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything... It's about how one little boy can bring an aching family together and make them whole again.